David's Blog

Control

For some reason, when I entered upon this endeavor, I think somehow I had imagined it might be interesting, perhaps adventurous, even in a way diverting. I was still young, in my early twenties; In my mind having learned much about seizures and epilepsy in general, yet only recently having taken full active responsibility for my own treatment of a seizure disorder I had since I was nine. My thoughts were that “It’s not my parents (Father) that are having the seizures, I am. I should be in control. Not them! (him)” I had lived independently for several years, working as a chef. This was taking a major step. I had gone to the Comprehensive Epilepsy Center to see if I was a candidate for surgery without consulting or informing my father of this. I figured he didn't need to know unless I actually was a candidate. Until then, I rationalized, it was simply a few diagnostic tests. I have to admit, it had proved a bit interesting in the beginning. I had met the woman that would end up becoming my wife in the admissions office, and she ended up in the room next door. (Well, that’s a whole other story!) Otherwise this was looking like every other hospital stay I have had, Boring as #*!!.

Tapered off medications and sleep deprived, I was into the middle of the 2nd week my video EEG to test candidacy for epilepsy surgery. Still zero seizures. I believe it was the 10th night there, about midnight, I was frustrated and incredibly bored. Suddenly I felt it hit me like a freight train; That feeling of impending doom that I had come to know all too well. It was so strong. The intense anxiety, the feeling in my stomach like giant butterflies. I could hear the EEG beside me going wild! But I realized instead of being afraid where I was, I could feel safe. I was in hospital bed with padded guardrails to protect me. I was being monitored. If I had a tonic clonic seizure, the entire staff would come rushing in. I need not fear. I then thought about what the first thing I would lose as the simple partial becomes larger, and eventually generalizes into a tonic clonic. The answer was cognitive ability. This, at least from my perspective at the last moments I can remember; It seems to slip away when a simple partial becomes more than I can handle.I also knew that stress was my number one trigger. So I quickly used a form of simple meditation I had recently learned that involves concentrating on relaxing each part of the body. This allowed me to focus on keeping my concentration, while also relaxing. I could hear the noise of the EEG return to more normal scribbles. The simple partial seizure activity will probably show on the EEG as lasting most of the time between, decreasing and increasing in intensity all night long. It was during this time I was fighting the seizures, letting them return, then fighting them off again. This hospital stay was now turning out to be extremely fascinating! Of course under the circumstances, the seizures did not stop, so neither did I.

At about 10:00am who would walk in for a surprise visit? Dr. Yoshio Hosobuchi (My father.) Naturally because I had not yet informed him of my intentions to seek medical treatment outside of his influence by going to a Comprehensive Epilepsy Center for evaluation as a candidate surgery. Imagine my surprise seeing him walk through the door! He was supposed to be practicing neurosurgery in a hospital in Hawaii, 2,500 miles away!

Unfortunately for me & my personal experiment, my father's presence brought stress, my number one trigger, plus the obvious distraction kept me from regaining the focus necessary to achieve that intense concentration and relaxed state it took to keep control to fight the seizure as it came again. Within 10-15 minutes of his short 20 minute visit, I had a tonic clonic seizure. This however was exactly what the doctors were waiting for. Two days later I was discharged from the hospital, back on my meds.

With that experience I established/discovered new levels control that continue to help me to this day.

My father recognized my control of my medical condition & treatment.

I found it could be possible for me to control my seizures

Two major successes!

Almost twentyfive years have passed, and what used to depended upon first consciously recognizing the simple partial seizure (aura), then doing what I do using a combination of mental relaxation and concentration techniques to prevent generalization into a tonic clonic seizure, now has evolved to the point where I no longer need to consciously concentrate on fighting the seizure (relaxation & concentration) anymore. Only the conscious recognition of the aura is needed. Once conscious recognition of the aura has occurred, the rest is now second nature.If my theories hold water, new pathways are being built, possibly by both a learned response, and a response to the repeated impulses caused by the simple partial seizure, and my “fight”.

I am now at the point where I am very interested in pursuing this as far as I can take it. I am extremely curious about exactly what is (has been) going on neurologically here. I have been seizure free for over a year, and am at the lowest level of medication I have been in my life.My goal someday is to be off all medication and to control my seizures myself.

Comments

:) Thank you for sharing your seizure story. One of my dear friends as a teen had awful seizures. Over the years I have lost track of him but I hope he is having the ability to control his seizures too. Jeanie :)

It has been amazing what a little knowledge about neurology, combined with common sense, and I must admit a years of dedication have accomplished. I wish to thank all of the members here for that, you have all helped me keep my personal dedication in this.

Thanks for your comments. Questions, or anything else, I encourage you to please keep them coming.

To all readers: Keep in mind that everyone's seizures are in a way very unique to themselves, so it can't be ruled out that the technique I have developed to stop a simple partial seizure from generalizing could possibly be unique to me. So don't just try jumping off your Meds to try this! Like medications, it might not be the right one (way to fight) for you. It could have detrimental reprocussions.

i'm reading your story and seeing the similarities between my panic attacks and your seizures. the impending sense of doom, the terrible anxiety and the stomach twisting are all parts of my panic attacks. my panic attacks happen during times of stress also, but not exclusively. i realize that i am already hyperventilating when i get the feelings of doom, etc. i learned the trick about regulating my breathing while breathing into a plain, brown paper bag. i never knew why this worked until i googled it and found the answer: http://en.wikipedia.org/wiki/Hyperventilation_syndrome , what is interesting is that it says people with epilepsy shouldn't use the technique of "overbreathing" to diagnose hyperventilation syndrome. it also says that the feelings that hyperventilation causes are caused by "respiratory alkalosis" or high blood pH. if i don't have a paper bag handy, i also use the techniques of counting how long i inhale and exhale and also of relaxing muscle groups from my feet to my head, maybe the same ones you use.

i started to use benzodiazepines at age 32 to control the 2-3 weekly panic attacks i had been having since i was 19 y/o, which started after a traumatic incident when i was 18 and also caused the post traumatic stress disorder i was also dx'ed as having. i only have a panic attack maybe once every year or two now, depending on what's going on in my life. once i realize i am hyperventilating, i can easily stop that and thus stop the panic attack, but i don't notice my breathing patterns until i am hyperventilating.

i sincerely believe that your brain is building new neural pathways that are helping your brain to be flexible in fighting your seizures. by meditating and using other techniques, you give your brain the power to "ride the waves" of your seizure. there is a very good facebook page and also a website called "the mind unleashed" (www.themindunleashed.org). recently, they had an article on breaking habits (and creating new neural pathways), that i read: (http://themindunleashed.org/2014/03/...-pathways.html). i realized these are methods i had already read from various sources when i set out to try and lose weight (something i had already tried and had little to some success). this time, i managed to lose a bit over 100 lbs. and keep it off since 2006. i truly believe that new neural pathways changed the way i viewed eating and what and how much i ate and allowed me to slowly build the pathways i would need to "ride the waves" of the habits that led me to overeat.

the brain is a mighty powerful tool. we have to learn how to harness it's power to heal ourselves. we have to put our brain in synch with our spirit, our spirituality, good nutrition and positivity towards all life on this Earth.

i congratulate you on having the courage to undertake this journey and for the successes you have had. i hope you reach your goals. i'd be interested in any sources you read on the internet or elsewhere about building new neural pathways.

“The green reed which bends in the wind is stronger than the mighty oak which breaks in a storm.” Confucius

David, thanks so much for this post. It is obvious that you are a very strong minded person - to do what you did without the advice of your Physician Father. You seem to have done extremely well with the handling of your situation. I am happy for you and for us here on this board.Virginia

i have always listened to the advice given from my father, and valued it. Though I have not always used or followed it exactly in the way it probably was intended.Really, at the time I did this, I have to admit that I was young, brash, more stong willed, rather than strong minded. My purpose was mainly to show my father that as an adult, I could take control of my own health problems and knew enough to seek proper care. I had also decided that it was time to seek an outside opinion, one that would not have personal issues. Having a father for a doctor was good enough when you had a cough or a cold. He even diagnosed the fractured fibula that would have gone unnoticed on the x-ray at the ski slopes when I was 8. Though for a chronic condition outside of his specialty, especially for family, I realized it was not the proper way to get treatment. I decided it was time to act in my best interests.

Yes, I have done some research on building neural pathways, what is called learned response, and then repetitive stimulus through these paths to reinforce this. Practice makes perfect. Sort of like learning to ride a bike. Once engrained, it becomes second nature. What I have learned from this is astounding. What the nervousness system is capable of under certain circumstances can really blow your mind!

As for what you describe as panic attacks, they do sound like they could be similar in some way if in fact they are a simple partial seizure.
I can't say I use the same technique for relaxation, and I think it would be too difficult to explain exactly what I do here, and really I don't know if I could.

The 1st thing is to realize that it is a seizure. Then realize that you can do have some level of control, as long as you are conscious and can focus on what you are doing. That in itself is a very self empowering tool. Because even if you fail, you will learn from it and remember what you did. You will learn what does & doesn't work. Everyone falls when learning how to ride a bike. You just get back on and try again. Each time you get better at it.

There are several reasons that makes me keep going on with this is, one is the thought that possibility that one day I may build up these pathways to the point where drugs are no longer needed to help control my seizures. I also have a few that are based on more "what ifs" than actual proven & established means. What if this could be taught to children with similar forms of seizures. The brain of a child, by its very nature is much more able to learn and grow. It is only rational to think that they would be able to make use of techniques like this more effectively than adults. Another is along the lines of using neuromodulation in conjunction with what could be learned from EEG telemetry of this. Perhaps a new type of simulator could be developed?

I also do know a bit about the history of neuromodulation. That was very much along the lines of my father's specialty. He happened to be a pioneer in that field. Curious? Look up Dr. Yoshio Hosobuchi; keywords: Deep brain stimulation, pain control, neuromodulation.

This is amazing stuff!!! Thank you so so much for sharing! It reminded me of this post http://www.enterthefaun.com/whats-in-a-brain/ Apparently this kind of focus is already being used on people with CP and dystonia so it makes perfect sense to me that you have the ability to focus on individual body parts to control seizures. From what I understand brain cells themselves don't regenerate(if they die they don't come back) but the connections between the cells that are alive and left to function normally change and can take over the functions of any brain cells that are dead. Even in older adults. The connections between the cells are the new pathways. Indeed we can heal ourselves but sometimes it is a slow process. I have learned that working with the brain and body takes immense patience but it is totally worth it! Keep it up!!!

Yes funnylegs4, I have some familiarity with this. One type of way the brain does this is called collateral sprouting. Where there is continued stimulus along the interrupted nerve pathways due to injuries, the dendrites can "sprout" in some cases a great distance to bridge the gap between old connections. I understand that it takes much therapy, determination, and patience from the patients, but is possible.

Yes funnylegs4, I have some familiarity with this. One type of way the brain does this is called collateral sprouting. Where there is continued stimulus along the interrupted nerve pathways due to injuries, the dendrites can "sprout" in some cases a great distance to bridge the gap between old connections. I understand that it takes much therapy, determination, and patience from the patients, but is possible.

Yes I just read this when learning about dendrites in a class(the structure of neurons in itself is amazing, such a well oiled machine). They said some of this kind of idea started in the 1980s and 1990s but they are finding more proof of it now. Practice and repetition are the main thing for building new connections. I constantly remind myself of this in my therapies.

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